TAMOXIFEN-VERY UNDECIDED ON DECISION TO TAKE FOR 5 YEARS :/

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Ladybug915
Ladybug915 Member Posts: 4
edited September 2015 in DCIS (Ductal Carcinoma In Situ)

I Have apt for Oct 1st to go and discuss all info with oncologist ... side effects ..pros an cons...etc..but I have been reading a lot about the medication which has just freaked me out a little ...I am 46yr old and have NOT gone thru menopause ...and everything I have read has been negative :/ has anyone out there felt the same? has anyone had positive results taking Tamoxifen?

Singing

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  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited September 2015

    What do you mean by positive results? Its purpose is to prevent breast cancer, so I guess I won't know for sure because it's hard to prove a negative.

    I can share my experience. I am 49 (48 at diagnosis) and pre-menopausal. I am in "chemo-pause" right now, unknown if my menstrual cycle will return, doc says 50/50 chance. I have been taking Tamoxifen since April. I did have some dizzyness at first (which I now attribute to the tamoxifen), and hot flashes (but I had hot flashes already due to "chemo-pause"). Other than that I have had no side effects at all. You will see many women post horror stories about tamoxifen side effects, but you have to remember that most women don't post if things are going well. I certainly think it's worth giving a try. You can always stop taking it if you have problems.

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  • Ladybug915
    Ladybug915 Member Posts: 4
    edited September 2015

    Sjacobs146~

    ARRRRGGG Im sorry that you have to go thru that...Im so lucky I didn't have to go thru chemo...I just got done with the radiation therapy and that sucked enough...positive results?..you are right...I guess I was meaning...positive as far as side effects not being soooo horrible....I do plan on giving it a try ...just scary reading all the "horror stories" lol and I know everyone reacts different to EVERYTHING....I have been reading post on this site for a while and just now decided to create an acct to be able to help those just starting...because I can now say...YEP been there :) .....

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  • Annette47
    Annette47 Member Posts: 957
    edited September 2015

    I’ve been on it for 2.5 years and have tolerated it quite well. A few annoying side effects (mostly mild hot flashes and occasional muscle cramps) but in many ways I feel much better than I did before - my hormones were all over the place and my breasts were sore and tender from ovulation on through until my period. I was also having very frequent, heavy periods. Almost immediately with the Tamoxifen the breast tenderness went away and my periods got lighter and less frequent, and I just felt more balanced overall.

    As long as you have no particular risk factors for the more serious side effects (uterine cancer - usually only a worry for post-menopausal women, and blood clots) then all of the “quality of life” side effects people complain about will go away once you stop the drug, so you can always try it and see - and quit if it becomes too much. You don’t need to commit to the full 5 years right away.. Remember though that most of the people who are doing well and not minding it aren’t here posting as they have nothing to say. It’s the people not doing well that tend to post, so you are not hearing from a representative sample.

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  • Englishmummy
    Englishmummy Member Posts: 337
    edited September 2015

    Ladybug,

    I hear you completely - we are so drawn to the 'darker' side of things.

    I freaked myself out about Tamoxifen, pre-BC I did not take anything, even OTC meds for a headache -  I never got sick. I read all the side effects, med reports and whatever else I could; cried for many hours and got my self in a right tizzy for no warranted reason - my ususal logical self was completely out the window, I think at times I was more afraid of the Tamoxifen than 'it'. I was told by my Onc, my surgeon and my Ob that younger women tolerate it very well for the most part and I decided, just as Sjacobs said, I could always stop taking it but was/am not brave enough to skip it with 3 youngish children. Sooo, I did a TV Ultrasound as a baseline for my OB (and will continue to do one each year) and took 1/2 a pill every other day for a week (NOT under the advice of my onc but to get my head around it), then 1/2 a pill everyday for a week and a full pill on the 3rd week. That really worked for me pyschologically.

    Fast forward 3 months.... I have nothing to report except that my period is every 35 days and only 2 days long....my NN says the monthly may even taper off completely - that may be a win? I'm 41 and was not showing any perimenopausal symptoms and I, like yourself, did not have chemo  .... I have no hot flashes (yet?) or any other SE's . One has to bear in mind that Tamoxifun (my children nicknamed it that as it will allow me to have more fun with them:) can have accumulative SE's over-time, that is not a given either.

    Let's face it, most perscription meds have scary SE's but millions of people take them every day and most are ok. If this drug can really stop mets in some people.....I feel it is worth a try.
    Good Luck whatever you decide, and stay healthy!

    Edited after reading Annette's comment....That is so true. I do feel more calm. Before I was dx several people had said I might have something hormonal going on as I was always 'jittery' - constantly on the move from dawn 'til dark (I have not eaten sugar or drunk caffine for a very long time). I really do feel calmer, I never put that together before - thanks Annette!

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited September 2015

    positive results to me would be to be cancer free

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  • plumster1
    plumster1 Member Posts: 270
    edited September 2015
    I have been on about 5 weeks. Minimal SEs. A little nauseous ness at first. That has gone away though. I would say my biggest SE right now is loss of appetite. So I eat more on a schedule than my hunger level. My advice..don't freak out, it will probably be better than you think.
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